I’m still here. There’s a lot to be said for that. As you may be able to see (especially those who follow me on twitter) I am spending my time just keeping up with life and processing this whole surviving thing. I am hitting the six-month […]
Last month I struggled with a sense of aimlessness. I am now about five months into remission and that feeling still exists to some extent but has been overtaken by a sense of doom. Thankfully I am not moving through my days feeling depressed. I […]
This is my last post before surgery. During surgery, they will be able to stage my cancer and tell us if I need more treatment, like radiation or chemo. But finally, on Friday my treatment will begin.
My nerves still hum… it’s been like that for days. I wake up at super early every morning and have to chase away gorry thoughts about surgery.
I pop up the stairs after walking my dog and I can’t help but think about how I am not going to be able to leave the bed, much less the house, much less climb stairs soon.
I have little conversations with my body. I cheer it on. I remind myself I am strong and healthy. We just need to remove these parts. I will heal and I will pop up the stairs with my dog in tow again soon. It’s all temporary.
I am afraid of seeing stitches in my skin and in the same breath I can’t help but think about how amazing it is how the human body heals. I am afraid and I know there is magic inside me and I can get through this with the help of the people who love me. I get pushed back and forth between fearful thoughts and my own strength. It’s a lot of work to manage my thoughts.
I’m so grateful for so many things these days. As hard as it is to go through this I am very lucky. I’ll be down for the count for Thanksgiving, but my mum in law is staying here and will cook a feast. My friends have stocked me up with things that taste good, smell good and super soft socks and blankets. Bills are piling up but we have good, healthy food and plenty of thing to keep us entertained.
My job is supportive. They make decent health insurance available to me and cheer me on. My coworkers, tho weirded out when I first gave them the news, have ponied up and just worked alongside me. Allowing me to keep busy and keep my days as normal as possible.
Why am I so grateful? It could be the rotten, bug-infested food offered to me by my foster family. (They ate the food without bugs.) It could be the park benches and filthy abandoned buildings I slept in as a teenager. (I preferred those circumstances to the abuse of foster care.) It could be the deadbeat landlords of the ghettos I lived in, leaving us for days with no heat in the dead of winter. And the nights my roommates and I took turns standing guard at the stove door, watching to make sure the heat poured out and the pilot light stayed on. It could be the 18 hour work days or the multiple jobs I have worked most of my life so that I could crawl up and out of those circumstances. I have survived a lot.
As hard as those days were, they did set me up to appreciate every little thing life gives me today. So perhaps cancer is another chance for me to find more grace and beauty in this life I have been given? Or perhaps I am just a dumb optimist who sees the silver lining in everything? I don’t give a shit. I will not over think that question. All that matters is that despite it all– I am happy and I am resilient.
Now I will hunker in, work through the pain and heal through the winter. I’ll be a different person in the spring. Isn’t that what everyone hopes for in the spring?
Surgery happens this Friday. Now there is a low hum of nervousness that constantly resonates out of my chest. It started yesterday and is so real that I can damn near touch it and see it. I wish I could make it stop. The thing that I have been […]
Uterine cancer is also called endometrial or womb cancer. People don’t talk about it enough… perhaps because it mostly happens to older women? Perhaps because women are not sharing their grief with this diagnosis? But uterine cancer can also happen to younger, body positive, fearless women like me. […]
Still managing to keep my head in a good place. I have these passing panicked thoughts about surgery and incisions and losing part of my body to cancer. I am getting pretty good at setting them aside.
The mind is a funny thing, you can play honest games with it and get what you need. It helped to create some happy places in the future rather than looking back at happy times and places. For some reason, I felt more pain looking back– like I was mourning for those good times and places. On the contrary, looking forward gives me joy and energy. Whatever works.
I have also been thinking about how this cancer is hereditary. It’s been existing in my family but no one knew. I have heard of people doing genetic testing but I never understood why. I guess poor people don’t do those things? At least not the poverty-based family I come from. The good thing is that at least my siblings and their children have a chance to test early and be prepared to care for themselves.
When I sent my siblings a document they can take to their doctor my sister asked if I learned any other interesting facts from my pathology, like “if I’m part Neanderthal or anything?”
I told her I was 100% fairy.
My brother then said, “Monkey fairy. You’re a hybrid. Or a mutant.”
I agreed that I am, “I am 100% two things.”
So you can see… they take this whole thing very seriously!
Also, did you know there is a national registry for people with cancer? I only found out when my doctor uploaded a document to my online charts stating that I had been added. They use it to map environmental cancer outbreaks and gain statistical information. It’s kind of awesome and creepy at the same time.
Surgery is scheduled for November 17th but could still happen sooner if there is an opening. I go to the hospital tomorrow for pre-surgical testing. (More needles! Bluck!)
I am trying to take it one day at a time. Now I wait. Then I heal. We will all see what comes after that. In the meantime I am eating well, doing yoga and anything else I can to be as strong as possible when I go under.
Having family here and getting love from friends have been a good distraction. Even if I am a bit of a hermit, y’all still find ways to love me. You are amazing. I am so thankful for the people I have in my life.
(Photo: Words written on a wall saying “Its moving kind of slow.” Lower East Side, NYC. Circa 2010.)
I’m making a list… My brother’s wedding Getting new tattoos with my husband when we get our no evidence of disease report Going back to martial arts Learning how to do aerial yoga Plotting my spring garden (I’m planting/learning to grow more food next year!) New […]
Yesterday I completed all the pre-surgical appointments. As soon as we got in the car I called the desk where they are to schedule my surgery. Got the voice mail. Again. Fuck.
They may be hating me over there, but I am over it. I left another message. This time I told them “I have achieved EVERY obsticle you have had to scheduling this surgery. The surgical urologist is ready to coordinate the times with my surgeon.” It’s so frustrating because she told me she was speaking with the surgeons to get it scheduled a week ago.
I hung up and felt instant frustration because I have done everything I could do. I have nothing left to do. I also had this feeling that I will spend the rest of my life waiting. Now I am waiting for surgery. I’m waiting for more pathology reports and cancer staging that will come immediately after surgery. After that, I will be waiting to heal. I am waiting to learn how my body will change. Will I need radiation? Chemo? I don’t know. I am waiting to find out. Eventually, I will see an oncologist every 3 months to monitor my body. If I am lucky I’ll spend the rest of my life seeking and waiting for NED (no evidence of disease) reports.
I have resigned to the fact that I can’t sit here waiting. I have to make the most of every day. I have to change my mindset. I am not sure what that means yet, but I’ll get there.
Tuesday was my hardest day since I was diagnosed. It started with a mammogram. I walked into the office and they told me this was a woman’s clinic and my husband could not be there. Yet there was a dude standing at the counter. I pointed to him and said, “What’s he doing here then?” They tried to tell me he was there for some other procedure. Needless to say– I kept my husband by my side.
Why would you tell any patient that the person who cares for them enough to come to an appointment with them was not allowed to be with them in the waiting room? Men get breast cancer, men get mammograms, men love women who need mammograms, and you can’t look at anyone and assume their gender. Their practice is antiquated. (My breasts scans looked great tho!)
Next was my pelvic CT scan with contrast. Contrast is so gross. I had drink fluid. More fluid was put in through an IV. The IV fluid is hardcore. When they initiate it your body turns hot, you feel like you are gonna pee (so weird!), and you get this metallic taste in your mouth. I had this done endlessly when I was a child.
Perhaps it’s more uncomfortable than painful for most people? For me, it’s very triggering. It’s as if I can taste a nightmare that I actually lived if that makes any sense? I taste the needles they put in all my veins, one by one until they all collapsed. I can feel the IVs they put in the tops of my feet after the exhausted the veins in my arms. I remember the bruises and residual pain from the needles. I remember the Pakistani doctor who grabbed my arm tightly, pinned it down and threatened to hit me because I was a noncompliant seven-year-old child. I remember the hospital elevators, halls, rooms, the spots on the ceiling tiles, the neon light bulbs, the patterns on the hospital gowns… all of it. All those memories exist in the taste of contrast fluid.
Through this, the medical pros that were administering the CT scan could see I was distressed. I am alone in the room, but they can watch me on the little close-up camera above the CT table.
I lay there. I am silent. The tears run down my cheeks, through my purple hair at my temples, and onto the pillow under my head. When I got up there were purple teardrops on the pillow.
“Are you doing ok?” they ask.
I can’t reconcile why I still cry over long gone pain and why these tears feel so humiliating. Is it the heat of the contrast fluid? That someone is doing things to my body against my will? Is it my lack of self-control? Is it that my body had betrayed me again with illness? I don’t know.
I have started to compile resources for myself through time, but I can’t help but notice how none of the medical professionals I have seen has had a single mental wellness conversation with me or a single resource to share. You would think any doctor office would have a printout, a pamphlet, or a phone number one can call for help through this process. Instead, they all have pharmaceutical pamphlets on injectable weight loss drugs and fertility. It’s fucking frightening.
I ended the day with more blood work and a medical clearance where they found I have been peeing blood. Who knew?
Not me. I think with all the discomfort and pain, I can’t even recognize where it’s coming from. So now I am on antibiotics, I am pretty sure I’ll get some of my energy back after I complete this round.
So what does today bring? My last cycle has arrived. I thought I might throw a party and celebrate this day, the last hurrah of my little uterus, but mostly I just feel unwell. 🙁 Grrrrrr…
I do have an appointment with a naturopathic doctor today to seek answers on how I can heal and care for myself after surgery. My sister delivered her well-researched list on actions I might take to deal with abrupt surgical menopause. I think I’ll work that list over this evening.
To my family and friends… you have no idea how much your letters, packages, tweets, and replys mean to me these days. I know I am not the best communicator/responder, but I am so thankful to not be alone through this. I love you.
(Photo: Me and my husband.)
I am still waiting for my surgery. In the meantime, I do art. I use these beautiful markers that have tips like paint brushes. I have two crochet projects. I catch up on TV show in chunks. Thankfully my husband has a real knack for […]